A Personal Matter

Yesterday, a reader left a comment on the post It’s Not the Vaccines in which she noted (1) she is pregnant and (2) her husband has a “12 year old daughter from a previous marriage who has severe autism and mental retardation. When she was about 18 months old, she had the MMR and that evening had a severe reaction to it.” The reader, Christy, then asked me this question:

So, Dr. Chew, if you found yourself pregnant tomorrow, would you take any additional precautions to try to mitigate the risk of your unborn child developing autism?

I really have to thank Christy for asking me this, and for writing about what are some very, very personal matters here. My answer to Christy’s question is below, after some reflections about why vaccinations and children has become such an emotionally charged issue, and about why more parents have been deciding not to vaccinate.

The March 21st New York Times in fact reports that the number of parents seeking exemptions to laws requiring vaccinations for school-age children has been rising since the early 1990s:

Every state allows medical exemptions, and most permit exemptions based on religious practices. But an increasing number of the vaccine skeptics belong to a different group — those who object to the inoculations because of their personal beliefs, often related to an unproven notion that vaccines are linked to autism and other disorders.

California, Ohio, and Texas are among the twenty states that allow exemptions. Of interest in the New York Times article is how parents defend their decision not to vaccinate a child: Choosing not to inoculate a child is just that, a choice, and a personal one made in the interest of one’s own child, and in full knowledge of the potentially harmful effects that such a choice might have on public health.

“I refuse to sacrifice my children for the greater good,” said Sybil Carlson, whose 6-year-old son goes to school with several of the children hit by the measles outbreak here. The boy is immunized against some diseases but not measles, Ms. Carlson said, while his 3-year-old brother has had just one shot, protecting him against meningitis.

“When I began to read about vaccines and how they work,” she said, “I saw medical studies, not given to use by the mainstream media, connecting them with neurological disorders, asthma and immunology.”

Ms. Carlson said she understood what was at stake. “I cannot deny that my child can put someone else at risk,” she said.

It might also be said that a parent who decides not to have a child vaccinated is potentially putting their own child’s health at risk, as Alexandra Stewart, director of the Epidemiology of U.S. Immunization Law project at George Washington University, notes. Stewart also says that “many of these parents are influenced by misinformation obtained from Web sites that oppose vaccination”—-even though vaccine “exempters” have been found to be “well educated and financially stable.”

“Exempters” frequently refer to their need—their right—to make medical decisions for their children and themselves, based on their own research and often in opposition to the recommendations of doctors and other health professionals. That is, the reason often cited for not vaccinating a child is that an individual has the right to choose what to do; the advice and judgments of medical professionals are often regarded with suspicion. It was back in 1970 that the Boston Women’s Health Collective published a book called Our Bodies, Our Selves; the book helped to launch the women’s health movement and women—mothers—long used to trusting whatever doctors told them, started to ask questions and look for their own answers. Part of being a “good mother”—-a “good parent”—today is to show that you’ve done your research and are willing to take a stand on issues that directly touch you. And what can mean more than the health of your own child?

Alexandra Stewart, director of the Epidemiology of U.S. Immunization Law project, was cited above as saying that “Web sites that oppose vaccination” have been the source of much of “misinformation” regarding (for one thing) links between vaccines and autism. The internet is certainly a rich source of information, but one has to read carefully to sift claims from truths, speculations from science, rumor and innuendo from knowledge. Discerning these distinctions can become even harder when the issue is an emotionally charged one such as what causes autism—and discussions about a vaccine-autism link can quickly become as passionate and incendiary as any about abortion (and note how the notion of the “right to choose” what is best for the health of one’s own child is reminiscent of the notion of a “woman’s right to choose”).

One basic tenet of Our Bodies, Our Selves is this: Who knows one’s own body better than oneself?. Extend this notion to one’s family and to one’s own children: Who but a parent knows their own children best? I suspect that these notions are one reason that discussions about vaccines and autism become as emotionally charged, as fervent, as discussions about religion and, indeed abortion. Put it another way: When the subject is vaccines and autism, the personal and the political, and the scientific are fused, combined, and often just confused.

So here is my answer to Christy’s question about what I would do if I found myself pregnant tomorrow. Would I take “any additional precautions to try to mitigate the risk of [my] unborn child developing autism?” (And I will point out that I turn 40 at the end of this year, so if I were pregnant, I would be “at risk” for having a child with Down Syndrome or some other condition.)

I think that autism is genetic. When I consider some of the conditions or disorders (or whatever you might want to call them) in Jim’s and my own family history—-ADHD, OCD, anxiety, depression, various other things—-I have to say, Jim and I always figured that we’d have a child with “something,” though not necessarily with as severe of a condition as Charlie has. We both know that it’s certainly possible to live with ADHD etc. and manage these. That said, due to Charlie’s being autistic and our family health histories, if I had another child (and we are not going to), from the moment that child was born, we would be watching her or his development very closely. Not with a view to preventing autism, as I am not sure that this is possible, but in order to consider Early Intervention and other educational services as early on as we might.

Charlie being our first child—and us living in St. Louis when he was born, far from both of our families in California and New Jersey—-I had little idea of what a “typically developing” baby was “supposed” to do. Charlie was slow in his gross motor development, rolling over on his own at nine months and walking at 16 months. I nursed him until he was 13 months old and he never had a problem with this; he started solid foods around six months and took easily to this, and has always been a good eater. He slept through the night at two months. He loved being carried and cuddled and smiled and laughed and imitated Jim raising one arm over his head, but was not able to imitate Jim raising both arms. Looking back, I know that Charlie did not have joint attention and that he was too content to sit in one place and play with a tin of toys (the same toys) or his stacking cups.

It goes without saying that, were I to have a second baby, all eyes would be watching her or him and I’d have too many questions for the doctor and all the teachers and therapists that we know. We have autism in the family and, frankly, I would not be surprised if I had another autistic child. Vaccines would not be a worry to me. There’d be plenty else to worry about—getting services, lining up doctors’ appointments, reworking my work schedule, getting my parents to do double babysitting duties…. But knowing that we have been able to help Charlie, I think I might feel a bit less stressed.

Well, maybe just a bit. If I were expecting a second child (and, once again, I am not and will not be), vaccines would be the least of our concerns, but making sure that another child has what she or he needs to learn and and grow, and that Charlie does do: This will always be our chief concern.

Fabulous post on a very touchy subject. We had Fin immunized, and our second child. I agree with you that ASD has a genetic link, with environmental factors involved. We have friends in CA who decided not to immunize their 6 month old child who became a victim of the recent measle outbreak. Their baby spent 5 days in the hospital, and is at risk for development delays. With much wider eyes they are now seeing the benefit over the risk.

Jill

Great post and I also want to thank Christy for asking that question. I forgot to mention on the original post that my friend has a son with autism. His biological father has a sister with autism and the other relatives insisted that my friend not give the MMR shot for fear of getting autism. Well, he has autism and never had the shot.

Regarding my kids, they were both born in Europed and all of our relatives lived in the states. I had no clue what was considered normal develop. My oldest was very mobile and walked at 11 months. He kept babbling words but I could not understand what he was saying. He had strange behaviours (pacing back and forth, looking out the window, never responded to his name, etc.) but even at the age of two, I was only worried about his language development. It wasn’t until the double whammy of the clinic visit and our visit to the states that I realized it was more than his language that was not developing properly. My gut instinct did tell me earlier that something was not quite right but autism was the last thing in my mind.

RAJ

Kristina you state:

“Not with a view to preventing autism, as I am not sure that this is possible”

That statement is factually incorrect. There are a number of environmental links that have been identified which are preventing some cases of autism.

Thalidomide, Valproate Acid Syndrome, Fetal anti-convulsant syndrome, Fetal Alcohol Syndrome are all preventable by withdrawing them either from the market place, or public education regarding the proven links associated with these exposures.

Rubella autism has been largely eradicated with the introduction of the rubella vaccine.

Even genetic conitions like Phenylketonuria which has also been linked to autism can be prevented by newborn screening and implementation of a phenylalinine diet.

The surface has only been scratched with respect to environmental contributions to neurolgical development disorders including autism.

As long as the autism genetic research establishment drives the agenda for prevention, progress in identifying envirnmental contributions to the etiology of deveopmental disorders will continue at a snails pace.

RAJ

Correction:

“Even genetic conitions like Phenylketonuria which has also been linked to autism can be prevented by newborn screening and implementation of a phenylalinine diet”.

Should read “phenylalinine-FREE diet”.

http://parents.com/autismville Autismville

Oh my. Charlie and Jack are so very similar in the way they developed early on.

This is such a tough question. Thanks for taking it on.

http://my-many-blessings.blogspot.com/ Tina

Thank you for your posts on the vaccine issues… I do not believe at all that vaccines are the cause or a link – A friend of mine has 3 cases of autism (all cousins) in her family. And, my son, diagnosed with PDD-NOS, has an older cousin who is 27 years old who probably should have been diagnosed the same way when he was young.

There is a genetic link somewhere…how could there not be? My son showed signs of an autism spectrum disorder long before he ever received the MMR (hand flapping being the major sign). We have ADHD, depression, anxiety in our family. There is no way anyone can say that vaccine caused my son’s PDD-NOS. It was there all along.

Mitch Conners

We didn’t even pause when deciding to do it for our youngest. It freaks people out when we tell people in the community, but it helps them see that their thinking on the subject may be wrong.

The problem is that there are a lot of smart people out there that received a terrible science education. While they are smart about a number of things, they’ve bought into the conspiracy theories about mainstream medicine because of the corporate supplement industry. That industry has a stake in not educating people about how to understand real scientific studies.

http://www.autismvox.com Kristina Chew, PhD

@RAJ,

A recent study suggested that children who have Fetal Alcohol Syndrome (FAS) have been misdiagnosed with autism.

RAJ

Dueliing studioes. A half dozen studies have implicated FAS in ASD diagnosis. It should be pointed out that FAS primarybehavior is mental retardation which has also been confused with ‘autism’:

it’s highly unlikely that i will ever be pregnant again at well OVER 40, but if i were to have another child, i would do the same, Kristina, watch closely. in our case, we’d likely intervene with RDI-like interactions since they are so child-friendly anyway, and pay more attention to the things i didnt’ have a clue about when fluffy was an infant, baby, toddler, etc., in our case, the issues were clearly sensory, colic, night terrors, possible seizure activities, allergy to sleep, etc etc.

and i’d do the same vaccination schedule i did with my son (though i’d request Rhogam mercury free for me). i’d break up the shots so he didnt’ get more than one or two per visit, i’d do it on the relaxed schedule we’ve been using since the one proposed is really more for convenience and insurance coverage, and i’d forgo some, like hep-B and measles.

vaccines don’t cause autism. but i don’t need to add stress and strain to a developing infant and i don’t think toxins injected into the body are ever a good idea. maybe some of it can’t be helped but it doesn’t mean it doesn’t cause harm. is it a necessary risk considering the protection affording by most vaccines? probably. but it’s okay with me to watch these sort of things closely. pharmaceutical companies have made mistakes or covered their mistakes before, haven’t they?

in other words, i agree with you that the bulk of the energy, discussion and money ought to be spent on autism therapies that support and respect the individual, educational strategies for children, teens, and adults. but if some extra light is directed toward those who manufacture vaccines, i don’t think it’s entirely bad.

http://daisymayfattypants.blogspot.com Emily

Our youngest son’s development sounds very much Charlie’s in every way except the eating–he simply could not breastfeed and is intractably neophobic. I’ve been watching that child since his birth, given his oldest brother’s autism dx, and he has had significantly more obvious “red flags” than his oldest brother. Our middle son is–quirky–but not on the spectrum (he has ADHD).

All of our children were vaccinated, mostly on schedule (we delayed a couple of shots that I had concerns about and declined Hep). But their earliest development reflects perfectly (in my mind) where they are on the spectrum. TH could breastfeed (with a lot of help), was not neophobic, etc, but had some other very early signs (<1 yr). Dubya was pretty much on target with everything and compared to TH was fairly “typical.” The baby showed signs from birth (well before receiving any shots) that are very similar to what you describe in Charlie, and I’ve watched him closely from that time (we’re so much smarter about all of this now). He’s been having interventions since before he turned one, and given where we are now, that was a good good thing.

We are not having any more children either, but we knew about both dx for our older sons and felt strongly given family factors, etc., that it is genetic (it is well represented in both of our family trees), and we still decided to have the baby. We do not regret that decision at all. He’s a simply wonderful and funny little boy…who can’t talk.

http://mayfly mayfly

I am convinced my daughter’s autism is genetic, and was not caused by any post natal event or anything prenatal over which we had any control.

I certainly would still have had my daughter get all her vaccines. Knowing what I do now, I would have enrolled her in an “early intervention program” at an earlier age. These programs while not a “cure” for autism are the best shot of mitigating the disorder.

As far as smart people falling for non-evidenced based medicine. I know people with physics doctorates who take their child to DAN doctors. I also know that many DAN doctors are absolutely convinced they are helping.

There are many folks who see the fallacy of chelation and the like but champion facilitated communications despite its extremely poor results in well-designed studies.

Autism in the main is not preventable. I suppose before deciding to become
parents couples be tested to see if they have any of copy number variations or single nucleotide polymorphisms linked to autism
and base their decision on that, but keeping in mind such mutations are more often than not spontaneous.

Very few people regret being the parents of a child with disability. There may be disagreement over what to do about the disability, but very few regret having the child itself. This is hard for people who do not have such a child to understand.

http://daedalus2u.blogspot.com/ daedalus2u

If I were to have a SO, and if she were to become pregnant with our child, I would have no hesitation having that child vaccinated according to the normal pediatric schedules.

I would ensure that everyone’s NO levels were up to snuff, but other than that would do everything according to what the pediatrician says. Where vaccines are considered optional, I would opt for our child to have them.

I am Rh+, so if she needed Rhogam, I see no particular need to have it be mercury free.

http://aoskoli.blogspot.com/ VAB

I don’t think we’d do anything differently. But we would probably budget more time and money than we did the first time round.

http://www.translatingautism.com Translating Autism

Brilliant post Kristina.

“Put it another way: When the subject is vaccines and autism, the personal and the political, and the scientific are fused, combined, and often just confused.”

That’s just how it is. Cheers, Nestor.

http://autism.gbrettmiller.com Brett

Kristina,

Wonderful post. I think this is something that all new or prospective parents should read if they have any concerns about their children and autism.

Brett

Eleanor

Good topic. And my personal belief is that my son’s ASD is a result of genetics, given that both me and his grandma have many of the same issues. And I, like Kristina, have decided not to have more children, so I don’t have to deal with this exact issue myself.

That said,though, Christy, I think what I would do would be to NOT use the standard MMR shot, but rather find a physician who will administer a vaccine for measles, mumps, and rubella separately, and each at a different time. When I was following the biomed stuff a few years ago, Dr. Cave was suggesting that as a viable alternative to foregoing vaccination altogether (not sure if she sill is taking that view).

http://ppdnos.blogspot.com/ Laura

Well if I could do it over again, I would spread the vaccines out, and I might pass on the chicken pox vaccine. I don’t subscribe to the theory that vaccines cause autism, but I do believe in vaccine safety. Brad had adverse reactions to both the chicken pox vaccine and the MMR, and it just doesn’t seem very humane that the poor kid had to deal with both adverse reactions at once.

We’re all just too overworked and overscheduled, and the idea that we need to shoot them up with everything at once is a biproduct of the rat race. We place a disproportionately high premium on convenience.

Kristina, btw, the schedule has changed since Charlie received his shots. The reason I know this is because my 2 year old’s schedule was more aggressive than my 4 year old’s.

Karen

I did what Laura said she would do — with my second son, I had the MMR “unbundled.” Pete (who is on the spectrum) *always* had delays and issues associated with autism. He had no changes whatsoever with vaccinations. Still, at the time Luca was small, I did not know what I know now. I did know that several other members of my former husband’s family had spectrum-like issues. I had read a book on leaking gut (didn’t think it applied to Pete at all). I was doing my best to educate myself. I just figured “what if?” What if, in a child that may be predisposed to having some neurological issues (and I figured my 2nd son could be such a kid) and that the vaccination might be an environmental trigger…? I just didn’t know. So that’s what I did.

My second son is NT. I adore both of my children and am like-minded with Kristina wrt where monies should go. But when given the choice, I think any parent would choose “easier” over “harder” for their child. I don’t want to change who Pete is — he is amazing as is. I believe my job is to help him find his way in the world which isn’t always friendly or accommodating to him. But that’s fine; he’s worth it.

http://www.marlabaltes.blogspot.com Marla

Very well written post. The comments as always are equally engaging.I have often wondered this myself. Now that we have done genetic and metabolic testing I am even more convinced that Autism is genetic. I would not hesitate to vaccinate a child.

Patience

I’ll take a different viewpoint: I do not yet have children. My girlfriend and I both want kids, and there is possible family history on both sides: we both have some autistic traits ourselves (no dx for either of us, though); I have a strong personal and family history of anxiety; I also have a family history of ADHD; she has a few blood relatives with various ASDs and ADHD. We will, by necessity, be using donor sperm–most likely anonymous, as well. I know, deep down in my gut, the chances of us having a kid with something are very good (I like that description, Kristina).

We intend to vaccinate fully. We will likely space them out a bit because, like most of the other respondants, I think five shots at once is just mean for the poor baby. I don’t want to get five shots at once, and if my kid is healthy I see no harm in spacing it out a bit.

At the same time (autism ironically being one of my ‘special interests’ that could land me a dx), we’ll watch our kids and just try to pay attention. She has cerebral palsy, which wasn’t diagnosed until she was four or five. I know it makes her mum feel a bit guilty that they didn’t realize sooner, though at the time there weren’t any extra medical things they could have done to help her earlier. I would hate to feel that way when my kids are adults–the “I wish I’d noticed sooner, I could have fixed it all!” feeling.

http://www.autismvox.com Kristina Chew, PhD

@Laura,

And here in New Jersey, there are four more vaccines that children have to take—-Charlie has to take 2 more (including meningitis and whooping cough) as he is going into 6th grade; preschoolers have to get a pneumococcal vaccine and children in licensed childcare or daycare centers, a flu shot. Charlie had the chicken pox vaccine and then got a very mild case—-he was 5 at the time and there was no way that I would have been able to keep him from scratching himself had he had a much worse case.

Christy

Dr. Chew,

Thank you so much for your post, and to everyone who shared their thoughts! My husband and I’ve read each comment, and we’re coming up with the plan that’ll work for us. I’ll certainly keep reading here. This site is full of very well-informed, rational contributors, and I’ve already learned so much from you all.

Thank you, again.

http://www.autismvox.com Kristina Chew, PhD

@Christy,

And thank you for your thoughtful questions—–the discussion here has helped me to think more on these issues, and to learn a lot. It’s an honor to learn about your family—-very best wishes.

I read in the “Journal of Neuroscience,” that some researchers documented correlations between maternal exposure to influenza during pregnancy and autism and that studies in mice suggest there may be a relationship:

While these were not human studies, I would still take precaution to avoid exposure to influenza (of course, pregnant women try to avoid illness already). I also would not father a child if I were a man over age 40, which correlates with an increased likelihood of autism.

I believe autism has a genetic basis. My husband has AS, his mother had it or something like it, and his sister seems affected. His mother said her own sister (his aunt, whom I never met) was “mildly retarded,” although her father insisted she was not; the mother’s sister did live independently as an adult. Maybe she had an autistic disorder?

Two of my three children have AS/ADHD. I have sensory processing disorder and supposed ADHD; ADHD medication does not seem to work for me, and two AS experts suggested I am likely on the spectrum, though I never had a diagnosis. My oldest son–who has a different father than my two youngest–shows spectrum traits, but not enough to be AS, and is diagnosed with ADHD and depression (his medications help). I also have schizophrenia in my family (one uncle and two great-uncles).

My mother was classified as mentally disabled after being committed/evaluated in the 1970s, but I’ve had little to no contact with her in 25 years and can’t assess her according to what I know about autism. My father doesn’t remember or doesn’t want to answer my questions. I recall that she graduated high school, wrote in cursive and even authored basic poetry, could read (she sometimes read autobiographies of celebrities she was obsessing over). She also had epilepsy. Her entire family denied she was retardation and insisted she had a speech problem (as did she); she spoke EXCEPTIONALLY slowly. She lived semi-independently as an adult and received SSI. She couldn’t handle many adult tasks, like driving or cooking. Her doctor told my father she was mentally equivalent to a 9-year-old but that “if her family had accepted her condition and gotten help early, she could have functioned almost normally.” I have long puzzled over that statement. Doesn’t that sound like autism?

So, I feel strongly something genetic is going on, but I can’t say there may not be cases that have an environmental basis resulting in genetic mutation.

I do not subscribe to the vaccination theory, but I would not fault any parent for wanting to space out the shots as a precaution. I think this sounds reasonable.

I love what Dr. Chew wrote about observation and early intervention. I definitely believe these are very important.

I definitely have some relatives—-including my maternal grandfather—-who I think were on the spectrum (he emigrated from China in the early 20th century, got his degree in civil engineering from the University of California at Berkeley), and worked for the State of California as a bridge inspector. Really smart, really good at math, and a difficult man.

On the other side of the family, almost every cousin of my generation is in engineering or computers/software/technology. One cousin (he’s the only one besides me who’s not in those fields, though now and again, I think I would do fine in job as a software programmer) is over 40 and just had a baby last fall.

My MIL has a long history of depression, anxiety disorder, and bipolar. An amazingly smart woman with less than zero self-confidence; she has been in and out of psychiatric hospitals for years.

We tried Charlie on Ritalin for a very short period of time: He immediately stopped eating (very odd as he loves to eat) and became nervous and skittish, as if he were taking in too much—-everyone was relieved when we stopped giving it to him.

Cat M

Dr. Chew:

I have been considering whether I should get tested for the Fragile X gene, because of my mother.

We never tried ritalin; my youngest two take focalin XR. My middle one took Stratera for awhile, but the side effects were terrible. My oldest and I have been taking Adderall, but I am probably going to stop; I notice no benefit other than weight loss (to the point where people ask if I’m unwell).
I read that stimulants often do not have a positive effect in kids with autism/AS and NT children who do not have ADHD. It confused me, but I also read that the DSM manual prohibits diagnosing ADHD and AS concurrently, yet there are a lot of researchers who believe they are comorbid conditions.

I also read stimulants supress appetite, so I guess that is what happened to Charlie? This has not happened with my kids, but honestly it would not be bad if it did.

I do not fit the profile of someone who could be an engineer; I am terrible at math. I have always been very verbal and excel at writing and reading comprehension. Yet I also do well at spacial relationship tests. I have come to realize that despite being “verbally oriented,” I am a visual thinker, along the lines of what Temple Gradin describes. I believe my verbal acuity is a function of good rote memory and cognitive analysis. I also have a notable verbal/performance IQ discrepancy, so I assume something is going on.

You mentioned your husband has ADHD. Does he take medication and if so, is it helpful?

http://www.autismvox.com Kristina Chew, PhD

@Cat M,

yes, I do think the stimulants suppressed Charie’s appetite. My husband does take medication and it helps, but he doesn’t take it all the time and has for the most part learned to live with the ADHD.

I was once very good at math and then—in the middle of Calculus class—was no longer able to understand it. I’d have to describe myself (and my husband, for that matter) as “verbally oriented.”

My theory is that there is a genetic predisposition component to autism that combines with environmental influences to produce ASD. I strongly believe – and am following the research – that vaccines influence (“cause?”) autism by means of dna in the material used to manufacture many vaccines contaminating the recipient’s DNA. Please look into and comment on this, Dr. Chew.